These past two weeks have been a whirlwind of press and activity for your show Spina Bifida: Front to Back. I’ve been reading different articles about the work, but I’m interested to hear you talk a little bit about it.

Interestingly enough, I didn’t tell the Spina Bifida Association, my colleagues, that I was doing this project for a long time after I started it just because I didn’t want it to be a Spina Bifida awareness project. That’s not what it is. The genesis of it comes from my experiences going to clinics as a kid where you see all the specialists and it’s all well and good, keeps you healthy, keeps them updated on what’s going on with you, allows them to intervene when they need to, to do things. But that’s where the good part of it ends. It comes from my experiences of sitting on a stretcher wearing next to nothing and being talked about like I’m not in the room and you look over and there’s bleachers essentially, step seating, with the next generation of doctors and therapists and nurses looking on and learning and your dignity takes a back seat to that. What this project was all about was giving the people who I shot, an opportunity to say, “This is what I want to show. This is what I want you to see.” The front on portrait, “This is what I look like every day when I go to work or go to school or go to volunteer and, you know, live my life. This is what you see.”

The back portrait is about showing something that isn’t seen – the source of the disability, the source of the pain, the source of all of the fear and frustration that parents go through as we are growing up and living life and here’s why. Here it is but it’s not a bad thing necessarily.

There’s a lot of beauty in there and that’s why I did them in black and white on purpose – to make people stop and look. To look at the form, to look at the lines, to look at those scars and to see that there can be beauty and power in that and to sort of give that back to the people, to the people who’ve had my shared experience, to give them back that sense of their being in control.

The sessions were not me telling them, “put your hand here, turn your head this way.” It’s not a typical portrait session. It was, like,”What do you want to show? What do you want people to see?” They showed me what they wanted people to see and I was there to capture it.

It’s interesting that you can really see how body language plays a part in how we perceive people. These images seem to demonstrate that.

Yeah, I deliberately wanted to make the back portraits particularly look like the masters, you know, like the renaissance masters and photographers like Edward Weston and people like that who’s specialty is showing nudes. They specialize in showing beauty in the human body that way. I showed somebody the exhibit last week and she made a really interesting point and it’s really interesting to see how different people look at it. She saw the vulnerability of these folks in the face portraits, not the back portraits which is kind of the opposite of what you might expect. Because in order to take that back portrait, you know, they’re having to trust me enough to take off their clothes and be with me in that space. As much as you can kind of look at it when you’re in the shower, it’s not the same as sitting there staring at yourself in a picture. You can stare at your face in the mirror but try to stare at your back, you know, you can’t do it. These pictures are stark to look at.

What were some of the reactions that you got from people when they saw these portraits of themselves?

You can see their reactions in the words. That was why it was really important to me to include those quotes underneath the portraits. One woman expected her back to be grotesque and it wasn’t. It just is what it is and that’s a lot of the kinds of reactions.

Today, one of the men in the show brought his mother to see the show and she took a look at the picture and you could see the tears well up in her eyes and she was immediately back when he was a week old and facing surgery and an uncertain future and she was immediately transported back there. It was beautifully heart breaking when she just took a look at his picture and she kissed her hand and touched the glass. That just blew me away. Those are the kinds of reactions that I hope for and that the people who are in the pictures feel beautiful and see themselves in a great way and get some of that power back that they don’t always have in this world, that sees us as broken and different and in need of fixing.

The camera can be such a significant tool for reclaiming ourselves and how we are represented.

Yeah, that’s how I tried to use it in this instance. In some of my other work, I do a lot of street portraits and street photography and that’s a lot more sort of taking the image. Your grabbing the image in the moment and there’s so much controversy in that. I think it was Arkensas or something last week that tried to pass a law making it illegal to take pictures of somebody in public without first getting their permission. It didn’t even make it through, it was vetoed almost right away. Other countries, like in France, you own your image in public. You have a right to privacy in public. I visited France and I have a lot of pictures of people walking away, I deliberately didn’t take many pictures of people’s faces. I could be sued and they would win in France.

It’s a blurry line with privacy in today’s world with social media.

Legality’s only one part of it. You probably saw the story in the news about that guy who has that Facebook page of women on the TTC – some with their permission, like you can see that there’s an interaction there and some, not. And he posts them on his Facebook page and legally, he’s doing nothing wrong. The TTC can’t stop me or anybody else from taking pictures on the buses. If I saw an interesting person on the subway, there’s nothing stopping me from snapping a picture, legally. But legally is only one part of it. I don’t want to offend somebody.

I mean, I just want to show the world the way it is. The thing with street photography and why I love it so much is that it’s photography of the mundane. It shows people just living life and they’re the kind of pictures that aren’t going to matter to people now but a hundred and fifty years from now, people might look at my pictures and say, “oh yeah, that’s what Toronto was like in the 21st century.” That’s kind of what you hope for. Everybody wants to leave a mark and live on past our years and this is my way.

How did you decide you wanted to become a photographer?

It’s one part of me, just like Spina Bifida is one part of me. There’s a lot of different parts to me – I’m a husband, I’m a brother, I’m a son. I’m a lot of different things but photography came to me quite by accident. I was a kid and one of my step father’s friends brought a camera to some family friend event and I fell in love with the gadget first. I didn’t fall in love with idea of the image or the idea of capturing time or anything like that. I fell in love with the gadget. I wanted to play with it, I wanted to take it apart, I wanted to see how it worked and that was the first love. I came to appreciate what it could do much later. It wasn’t until high school that I really started playing around, I was the photographer for the school year book.

I imagine that must have helped your photography practice – initially taking it apart and really understanding how the thing works.

The interesting thing is, as time has gone by and I kind of got away from it, it has kind of been full circle. The camera to me now is just a tool. I can create what’s up here and what’s in here, bring it out with any camera. I can use an old 126 Instamatic. I don’t care. It’s just a tool. When I began with photography, the camera was everything, now it’s just a tool. I’ll work with any camera that I can get my hands on.

It’s amazing such a little gadget could create such a stir for you in the past two weeks!

This exhibit has taken off in ways that I never expected. I knew this was important. It was important to me, that’s why I did it. It was important to me that I give that gift to those folks to say, we’ve shared this experience, let’s show the world who we really are, what we can accomplish, how we feel about ourselves, despite being beaten down and left for broken pieces of humanity.

That’s not who we are. I’m living a great life. I’m a husband, I have a mortgage, like everybody else, I have a job. I’m living as part of society. I’ve had other exhibits in coffee shops and as part of previous Tangled events but this has become a pretty damn big deal and I’m proud of it. The Abbozzo Gallery, they’ve been incredible. They’re treating me like one of their represented artists. I’m beginning to feel like quite the narcissist. I go in there and look at my stuff on the wall and feel pretty proud. It’s pretty cool. It’s cool to see this work out there for everyone to see.

The idea for Spina Bifida Front to Back sat in my head for a couple of years before I even asked anybody. I didn’t have the balls to say to even my friends, “this is what I have in my head, would you like to do it?” I was fearful and it took me a long time to get up the courage to ask them to be a part of it and when the first person said, “yeah, I’ll do it, I’d be honoured to do it”, I had to check and say,”are you sure? Do you know what’s involved? You’re going to have to get naked!” I’m going to be putting you there and it’s for public exhibition, it’s not just to do it for the sake of doing it. There’s a reason behind it, I have something to say and they obviously have the same thing to say because those who said yes, and that’s about 95 percent of who I asked, agreed almost instantly.

It’s also a bit about visibility. These images are really strong for me because they’re about visibility of difference and the fact that we don’t see it presented in this way often enough.

That’s why I’m kind of thinking that looking at other disabilities in a similar way might just be a life’s work – all about how we inhabit our bodies and how society sees people with disabilities. I had one request from somebody else on Facebook. She saw the notice for the exhibit and she has Muscular Dystrophy and she said, “you should do other disabilities.” So maybe I will. I want to expand the Spina Bifida project too and work together with more people. I have an idea to travel across the country and add to it as I go so we’ll see if I can make that happen.Steve Kean is a photographer living in Toronto. He recently completed a Masterclass where he continued his work that focuses on how people with disabilities inhabit their bodies and how it may differ from everyone else. Influenced by the Henri Cartier-Bresson and W. Eugene Smith, Steve seeks to capture the moment(s) that can define his subjects and their place in society.

Steve Kean is a photographer living in Toronto. He recently completed a Masterclass where he continued his work that focuses on how people with disabilities inhabit their bodies and how it may differ from everyone else. Influenced by the Henri Cartier-Bresson and W. Eugene Smith, Steve seeks to capture the moment(s) that can define his subjects and their place in society.

Steve will be giving an artist talk on Saturday, April 25th, 3:30pm at Gallery 44, Suite 120.

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Tangled Art + Disability is boldly redefining how the world experiences art and those who create it. We are a not for profit art + disability organization dedicated to connecting professional and emerging artists, the arts community and a diverse public through creative passion and artistic excellence. Our mandate is to support disability-identified artists, to cultivate disability arts in Canada, and to enhance access to the arts for artists and audiences of all abilities.